Namaste, Spoonies

 

Panda is more flexible than I

 

I had my first ever yoga class last night.  It’s supposed to be gentle yoga, but it smacked me up hard.  I am now becoming one with my heating pads.  I’m taking the yoga class through the nearby rec center.  It’s a really small class, only 7 of us.  And I’m not actually the youngest in the class!  Huzzah!

I laid my thin yoga mat down on the hardwood floor, sat down, and said, “Nope,” and grabbed a thicker communal mat to lay under mine.  I’ve always hated sitting on the floor, especially without something to lean against.   So I sat there, waiting for class to begin and trying to figure out how to position my body — Criss cross applesauce, butterfly, pike, bent knees, pretzel sit.  None of them felt comfortable, especially since I was also trying to hide how jacked up the bottoms of my feet were.

Belly breathe

Class began with diaphragmatic breathing, which is easy for me.  As long as I didn’t have to do anything else while doing this deep breathing, I was golden.  But, of course, yoga doesn’t work that way.  Very quickly I found myself trying to remember to breathe, rather than hold my breath, as we did core exercises and my body melodiously chanted, Fuu-uuck youuuuu.  For the most part, I had to modify the poses.  Each time I lifted my arms toward the heavens, I felt like Winnie the Pooh doing his daily exercises.

It was like a sauna in the room before class began, so I was drenched in sweat by the time we were doing mountain pose — I was a strong, sweaty mountain.  I’m pretty sure I lost a pound just in water weight.  The skinny woman next to me was wearing long sleeves and wasn’t breaking a sweat, while I was wiping my face and fanning myself.  (I probably could have used a squeegee.)  I felt like offering her some of my body fat to help insulate her, so she too could sweat out her stress, toxins, and the Easter candy she ate.

As the class stood, doing tree pose, I started feeling really good.  I stood there, staring at the fuzzy, tan room divider and felt fantastic.  My body was calm and my mind was quiet. I was a joyous tree, swaying in a gentle breeze.  Of course, I didn’t have my leaves up while I was doing this swaying, but that just means that I was joyous to the very core of my trunk.  So really, if you think about it, I was the best a tree pose because I didn’t need leaves to show how good I felt through swaying.

As class began to wind down, we made our way down to our mats.  From a seated position, we engaged our core by slowly lowering our bodies to a laying position.  I was immediately reminded of one of the reasons I had quit aerobics and strength training; the fibro tender points on my butt were pressed.  I did my best not to yelp in pain, and adjusted my breathing to the rhythm of Fuck.. fuck.. owwwww, fuck.. fuck.. owwwww.  But I had finally made it to the end — deep breathing while lying on my back. I was a little annoyed that I had to relax with my palms facing the ceiling, which isn’t a relaxing position for me, but ¯\_(ツ)_/¯ .  So I breathed and stared at the dim ceiling and listened to Enya’s May It Be and thought, That’s right, Enya.  I am like Frodo.

Talking calmly through emergency room-level pain

Today, I’m pretty sure I was stabbed with white-hot pokers while I slept.  I talked to my family normally through, what would be for a “normal” person, pain worthy of sending them to the ER.  This is slightly inconvenient, as Zoë’s birthday party is this weekend, and the house is a complete wreck.  (Although the house isn’t as big of a deal, so long as my father-in-law doesn’t mind stepping around boxes, toys, and crushed goldfish crackers and a kitchen that smells like a restaurant dumpster.)  I know the more I do this, the easier and less painful it will become.  And anyway, you know what they say:
Whatever doesn’t kill you makes you die a slow, agonizing death in the alleyway where it shivved ya.

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As I Lay Hurting

 

I had my first pain management doctor’s appointment today, as the new rheumatologist I saw at the beginning of the month doesn’t do pain management.  I went in hopeful.  I should have known better.  Once again, I was met with fat-shaming and incredulity.  And after he was finished beating the shit out of my body, confirming what three other doctors have already diagnosed, I was treated to feeling like a drug addict when I signed the agreement not to sell my tramadol and handed them a pee sample.

I don’t really feel like writing a long, coherent post with subject, verb, tense agreement, so here are the highlights.

  • Is there something in the Doctor’s Guide to Being an Asshole that says that when a patient complains of fibromyalgia, the doctor must poke and prod as hard as possible so that the patient gasps and screams?  It’s like if you went to the dentist, complaining of a sore tooth, and the dentist shoved a sharp instrument up through it to make sure you’re really telling the truth.  I felt like I’d been on the wrong side of Mike Tyson by the time he was finished.
  • Maybe this is my own personal quibble but, when did doctors stop giving physician referrals?  I keep having doctors tell me, “You need to go see this specialist,” but don’t give me a place to even start.  Are we just supposed to figure it out for ourselves?  At the last doctor visit was the rheumo telling me I needed to go to physical therapy, but to make sure it was somewhere that has experience treating fibro.  Today, I was told to go see a dietician for weight loss and a non-inflammation diet.  And when I asked for professional referrals, they looked at me like I’m ridiculous and bothering them.
  • Why do doctors insist on fat-shaming their patients?  I was in a fuck-ton of pain when I was 100 pounds lighter, back before there were weight gain-causing meds and the inability to exercise.  Will weight loss make me healthier?  Sure. Will it eliminate my pain?  No.

 

Image via imgarcade.com

I’d like to get these doctors to understand how it feels to live with chronic pain, especially when it comes to exercising, (yet another thing I got shit about today, as I don’t do enough aerobic exercise.)  You know what I’d like to?  I’d like to beat the shit out of them with a baseball bat, tell them to drop and give me 100, and then scream in their faces like a drill sergeant:
WHAT’S THE MATTER, PRINCESS?! DOES IT HURT?  IS IT HARD?  ARE YOU GONNA CRY?  IS LITTLE BABY PRINCESS GONNA CRY?  Do you want to stop?  You do?  GIVE ME ANOTHER 100!

I’d also like to strap them into some sort of device that creates fibro pain, (like the ones that cause douchey husbands to feel what labor feels like) and then make them go for a 10 mile run.  RUN, FORREST! RUN!

  • “Studies show that Percoset and other narcotic pain meds don’t really help fibromyalgia.”

The pain doctor actually said that to me.  I just wish my body had known that when I had to take it while I was at Disney so I could have the ability to walk.  And I’m really tired of doctors saying that studies show this and that, when it’s really just an excuse to do whatever the hell it is they feel like doing. Of course, narcotic pain meds don’t cure fibro.  But on days like yesterday when I could barely walk without crying because of how much damage he did to my body during the exam, it would have helped. Fuck the “studies”.

I really wish I understood why doctors insist on under-medicating pain patients before they’ve even exhibited signs of addiction and abuse.  Doctors don’t do that to other patients in pain.  It would be the equivalent of a doctor saying to a person with a broken leg, “What you need to feel better is a cast and crutches, but you’re going to have to just walk it off and find some other way to feel better.”  It sounds ridiculous, but that’s what doctors do to chronic pain patients all. the. time.

Once again, I feel stuck.  Being stuck with a shitty doctor is almost like being stuck in an abusive relationship- you can’t leave because, if you do, it will look like you’re the one to blame.  It will look like I left because I’m a drug-seeker, hoping to find a dealer with a medical degree. You’re an addict, Harry.

Finally, a message to all the doctors who think I don’t exercise…

Another day, another asshole doctor

 

Keeping count like the Doctor

 
I finally went to see a new rheumatologist yesterday.  She was recommended to me by my primary care doctor and a friend.  I went in, hopeful that I would find this doctor to be respectful and one who would listen to my opinion and experience.  I left feeling as though I had been burned by the fire of a thousand side eyes.  On the one hand, she was quiet and let me speak.  On the other hand, hearing what I had to say is different from listening, and it’s on a completely different plane from believing.

Doctor Speak

How doctor’s look during a fibro appointment


Generally doctors don’t come right out and say exactly what they’re thinking. Well-trained in the art of throwing shade, they tend to belittle you in such a way that it sounds like they’re trying to help you.  We Spoonies are experts in doctor-speak.  We’ve heard, it’s all in your head, you hysterical (wo)man, in many dialects: “How is your stress level?”; “Do you have a history of depression?”; “Oftentimes it’s actually depression that causes pain.”  Other common conversations involve indirect, or even aggressive and direct, accusation of drug dependency. My “favorite” so far, as a woman who has gained weight because of medication, an inability to regularly exercise, a medically confirmed genetic tendency to easily gain weight, especially when medication is involved, and an availability of Girl Scout cookies, is the insinuation that I’m just a lazy, fat load who would feel better if I just exercised and lost weight.  Yesterday, as the doctor smiled derisively and subtly rolled her eyes, I was essentially called a drug-addicted fat load who just needs to get off her lazy ass and exercise.

“We want to go ahead and get you off the pain medication so that your body is no longer dependent on it.”
You’re addicted to opiod medication.

“Do you exercise?”
Do you exercise? Because you really don’t look like it.

“I can’t exercise too much, but I have two little girls, so it’s not like I’m sitting around.”
“Yeah, you really need to exercise. You could do yoga, tai chi, walking, water aerobics, you could just walk in the pool.”
Doing all the things you do as a stay at home mom aren’t good enough. And with all these options available to you, you really have no excuse not to exercise, you lazy woman.

“It’s actually been difficult for me to get into a class that works out. I was enrolled in a yoga class, but it was cancelled because of lack of enrollment. And if you go private, it’s really expensive. That’s why I’m working with someone at George Mason, in the therapeutic recreation program, to develop an exercise program for people with chronic pain. It’s frustrating for me because, before I got sick, I was doing aerobics and strength training regularly.”
“Really?”

I’m going to be stone-faced, smiling, and slightly roll my eyes because Excuses excuses blah blah blah excuses. Your exercise program is an adorable way of avoiding real exercise, so I’m going to keep nodding and giving you side eye. Wait, what? You used to exercise? You could have fooled me.

“Have you tried Topomax?  It’s like Lyrica, but it helps you lose weight by making some foods taste unpleasant.”
Let’s try this other drug because you really need to stop eating and lose some weight.

Hostile Intentions
So why are doctors so hostile toward people who live with chronic pain?  I believe it comes from prejudice, ignorant assumptions, misinformation, and lack of education.

1) Prejudice
It’s been pretty well established in research that general attitudes toward overweight persons are negative.  These attitudes do not suddenly cease to exist at the doctor’s office door.  Researchers at Johns Hopkins found that physicians were less likely to be empathetic toward and build rapport with overweight patients.

“Obese patients may be particularly vulnerable to poorer physician-patient communications, Gudzune says, because studies show that physicians may hold negative attitudes toward these patients. Some physicians have less respect for their obese patients, which may come across during patient encounters.”

Anecdotally, I, and plenty of people I have talked with over the years, have experienced such negative attitudes from doctors over the years. No matter the complaint, the recommendation is always the same: You need to lose weight. Granted, sometimes it’s perfectly within reason for the doctor to give such advice. But all too often, the doctor walks in and decides that weight is the problem, before even hearing the complaint.  I remember one visit I made several years ago because both of my knees had suddenly begun hurting.  The older, male doctor told me that they’d feel better if I just lost some weight.  Granted, I was a little overweight at the time, but not so much that my knees should have suddenly given me the level of pain I was experiencing.

2) Ignorant assumptions
Coupled with number 1, doctors make assumptions about how a person lives their life, simply by looking at their weight.  All they see is an overweight person.  They don’t care how you came to be that way, nor your daily routine.  They don’t see you hardly sitting down in a day because you’re tromping up and down stairs with baskets of laundry, cleaning up toys, doing the dishes, shopping for groceries and lugging all the heavy bags inside, walking kids to the bus stop, chasing them around playgrounds, and helping them ride their bikes, who generally has healthy snacks of fruit and Greek yogurt.  All they see is a fat person who is too lazy to join a Crossfit box and eats junk all the time.

Ignorant assumptions are not confined to lifestyles.  They are also made about individuals who take heavy duty pain meds just to function like a “normal” human being.  It is assumed that if a patient takes narcotics, particularly opioids, they will become addicted, if they are not already.  People who live in chronic pain tend to be afraid to ask for pain medication because of how doctors may view the request.  According to Social Work Today, “‘Living with chronic pain is exhausting,’ Barrett says. ‘The undertreatment of chronic pain can lead patients to appear to be engaging in drug-seeking behavior. I have had clients whose doctors have not taken their physical pain seriously.'”  The article goes on to cite a study from 2011, which found, “For patients with chronic noncancer pain, opioid prescription remains highly controversial, and even in the wake of prescription guidelines and educational efforts, primary care physicians continue to practice under misconceptions about appropriate opioid use vs. addiction, leading to patient undertreatment (Wolfert, Gilson, Dahl, & Cleary, 2010; Hooten & Bruce, 2011).” 

3) Misinformation and lack of education
I’ve combined that last two because they go hand in hand.  Plenty of doctors still do not believe in the validity of fibromyalgia.  I’d say it’s pretty difficult to effectively manage the pain of an “imaginary” medical condition.  In addition, many doctors do not have the training to administer effective pain management.  This lack of training not only includes the inability to prescribe an effective dosage, it also makes them fear that their patient will become addicted, should they receive narcotic pain medication.  According to a 2003 study published in Pain Research & Management: the Journal of the Candian Pain Society, poor pain management is something that doctors themselves acknowledge.  In a survey of 100 Canadian physicians, researchers found,

For moderate to severe chronic noncancer pain, opioids were the first-line treatment of only 32% of physicians (16% preferred codeine, 16% major opioids) because a significant number preferred either non-steroidal anti-inflammatory drugs (29%) or acetaminophen (16%). Thirty-five per cent of GPs and 23% of PCs would never use opioids for noncancer pain, even when described as severe. Chronic pain was deemed by 68% of physicians to be inadequately managed. Almost 60% thought that pain management could be enhanced by improved physician education. Identified barriers to opioid use included addiction potential (37%) and side effects (25%).”

The study goes on to conclude that, “Even among physicians experienced in chronic pain treatment, there is a reluctance to use opioids for severe nonmalignant pain. One-half of the survey participants believed that there was a need for improved physician education in pain management, including the use of opioids.”

Why this fear of addiction?  Where did it come from?  According to the same, above-referenced article from Social Work Today, it stems from a coincidental rise in prescription drug abuse at the same time doctors began prescribing opioids for non-cancerous chronic pain.

As a result of media attention on increasing rates of prescription pain medication abuse, those with chronic pain who had previously found improved functioning, psychological health, and quality of life with appropriate opioid use began to face increased difficulties receiving effective treatment.”

This leaves chronic pain patients to, effectively, sing for their supper.  Patients must prove that they really are in enough pain to require such heavy duty medication and overcome any biases and trepidation the doctor may have about prescribing it.  It also gives patients the onerous task of somehow allaying any suspicions that you are simply engaging in drug-seeking behavior to feed an addiction.  I have done this song and dance myself.  I put it off for a long time because I didn’t want to be judged as an addict.  Once I was prescribed Percoset for breakthrough pain, it took me over 3 months to go through 30 tabs, (many of them taken so I could walk at Disney.)  The new rheumatologist wasn’t buying it, though, and refused to give me a new prescription.

Now what do I do?
My first instinct is to turn tail and run hobble. Although there were some positives of the encounter, I am still left feeling dirty all over. It’s pretty clear that she doesn’t take me seriously, nor does she believe that I won’t abuse medication.  Her hostility toward me was reflected in the comment she made to me while I was having difficulty locating a word because of fibro fog: “This is why most patients write things down.”  Not one to take an insult lying down, I fired back that I couldn’t have done because it was a question about something she had brought up during the appointment.

If I were to leave and go elsewhere, again, I know that I would risk the appearance of drug-seeking behavior.  You didn’t give me the drugs I wanted, ergo, fuck you and on to the next dispenser of DEA controlled substances. I also realize that her attitude is pervasive, so leaving probably wouldn’t do any good.  I do hope that future encounters will allow her to get to know me, for me to know her, and a better doctor/patient relationship to form.  Until then, I’ll just need to stay informed, stay strong, and get my Stuart Smalley on.

Fibromyalgia and Broken Promises

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Her face falls and her shoulders slump.
“I’m really sorry, honey. I’m just hurting way too much.”
“Okay,” Rachael responds, shuffling away from me. She understands. That somehow makes it feel worse.

The annoyed sigh that I expected Mike to breathe comes through the phone.
“Okay.”
His response is terse. It’s not that he’s mad at me and is going to be a dick about me calling him to come home. Mike understands that a component of fibromyalgia is chronic fatigue and that, even though I said he could stay for game night, the day has become too much and I need his help. But it still doesn’t suck any less for him or make me feel any less guilty when I have to pull the rug out from under his feet.

Text to R:I’m sorry. I’m have to cancel today. Zoë was up half the night.

Text to J:I’m sorry, but I physically can’t keep my eyes open today. Mike is going to bring Rachael instead.

It seems that I’m always breaking promises and letting people down because of this damned chronic illness. I’ve learned to compensate by under-committing and making “hopeful” plans. I almost never promise my children anything anymore, just so I don’t have to break their hearts along with my promise. Language like, “We’ll try,” or “We’ll do our best,” has also become part of Mike’s vocabulary. He, too, knows better than to assume our plans won’t fall through at the last minute.

I hate breaking promises. I hate that, compared with my old self, I have become an unreliable, under-productive woman. Fibromyalgia recklessly rampages, unplanned and unannounced, not caring who is caught in its wake. I know that, for others, it must be difficult to separate fibromyalgia from me. I sometimes still have trouble making the distinction. But it’s not me who is letting everyone down; it’s the fibro.

I’m sure it may be difficult to understand that I can’t always manage my own illness. Surely, if I know flares are possible, I should be able to plan accordingly so I won’t have to break any promises.
That’s only partially true.
I know I need to plan on being wiped out for a week or two after a trip. I believe it took me 3 weeks just to recover from Christmas. I generally avoid planning more than one thing in a day. For instance, my trip to the dentist on Monday left me feeling as though I’d run a marathon, minus the shitting myself component. I avoid making plans with anyone after 5 pm. My body is generally done, physically and cognitively, by then. I even tend not to let my kids in on plans until they’re about to happen. Given the nature of this beast, it makes no sense to plan for a friend to come play after school ahead of time, as I’m usually useless by 3 pm.

Still, even with all this planning and compensation, I can be suddenly attacked with flares. Sometimes I can explain them, e.g. weather events. Sometimes I’m waylaid and left thinking, What the actual fuck? Where’d this come from? These flares are not simple mind over matter moments. I can’t overcome them by simply refusing to be a pussy and soldiering on. All I can do is take care of myself and let it run its course. And part of taking care of myself sometimes includes breaking promises.

Part of what prompted me to write this today is that Rachael and I have plans to go see Into the Woods today. Because of all the weather systems coming through, I’ve been in horrible pain this week. I feel like I’ve been walking on broken feet. My back and shoulders are compressed in a vice. And this morning I woke up feeling like my neck had been in a knife fight. The thought of holding my neck to watch a movie for 2 hours sounds like torture. But I took as many drugs as I safely could and hoped the pain would subside by movie time, because I’ll be damned if I’m breaking another promise to my little girl.

A Spoonie Does Disney: Part 5

This is the final part of a 5 part series about my experience, as a spoonie, vacationing at Disney World. Here are parts 1, 2, 3, and 4.

I discovered that my love for roller coasters has become tainted. I’ve never been one for the fucking insane most adventurous rides, but I do love a good zero to OMGWHEEEEEEE! with the upside downs and sharp banking. So it was disheartening to find that I was really going to have to suck it up and take some real pain if I wanted to ride the coasters at Disney. (And the ones I rode at Universal Studios at the conference block party. Consider wearing body armor if you’re going on Transformers or the Minion rides.)

The first coaster we rode was the Aerosmith RocknRoll coaster. First of all, holy crap on a cracker, y’all! I think that coaster would have been rough, even without the fibro. It was pitch black for the first 10+ seconds of the ride. I made my throat sore, screaming for my life during that coaster. It ended up being fun, but holy shit was it rough on my neck. The same is true of Star Tours, Everest, and Space Mountain. All a lot of fun, but are murder on the neck and back. The new Seven Dwarfs Mine Cart coaster was fun and much easier on the neck. It didn’t leave much room for my legs, which made for a lot of pain around the curves, as my legs and knees mashed into the lap bar.

Ultimately I would have been sad if I had let my fibro be in charge and hadn’t gone on any of these rides, but the price is pretty steep. I said “shit” and “fucking ow” as much as I laughed and said “whoo”. Drug up in advance, people!

Line up, everybody!
After my experience of standing in line for Soarin’, I wanted nothing to do with standing in any line for very long. If we couldn’t fast pass something, or the wait was longer than 30 minutes, we just didn’t do it. We did a fast pass for the Aerosmith coaster, so not a big deal. We hit a big snag in our plan when we arrived at Everest at Animal Kingdom. No fast passes were available, and waiting in line was going to be almost an hour. But then, an awesome cast member at the fast pass kiosk told us about the single rider line. It’s one of the few rides in Disney where you can get in a separate line if you’re planning to ride by yourself. You become a seat filler with the odd numbered parties who all want to go together. Mike and I ended up on the same coaster, just different cars, and only waiting about 10 minutes! I’ll be honest, when we started going backwards in the dark, I wish I had had Mike’s freckled arm to squeeze until his arm would break. But overall, it was really fun and we were able to cross that coaster off our list.

At the new 7 Dwarfs Mine coaster, waiting in line for an hour was just fine because I had my wheelchair by then and the line was wheelchair accessible. But, as is the case with many older buildings and walkways, Space Mountain’s regular stand-by line is not wheelchair accessible. So a cast member directed us to the fast pass line to get a return time, as the new fast pass line is wheelchair accessible. I think they wrote the time down wrong. Rather than an hour wait, we only waited 15 minutes. Make sure that whomever is pushing you up and down the steep angles the fast pass line takes is in peak physical condition. Mike was a trooper, hoofing it up those inclines and preventing me from become the physical comedy trope of a person in a runaway wheelchair on the downward slopes. At one point, the rubber grip on one of the handles came off while going downhill, which made things interesting. After we managed to avoid fiery collision, Mike parked me and went back up the line to find it. It’s terribly awkward to be sitting by oneself next to a line of other people. I should have started quacking to emphasize my current state and make everyone feel better.

After our arduous journey over hill and dale for many a fortnight, depleting our skeins of Tang and supply of freeze-dried lembas bread and limbs quivering from all that they had to endure, we finally reached a place of rest on the Mountain of Space. There we found rest from the kind mountain villagers, who prepared us for the next phase of our fantastical journey. We hobbled toward the space pod, which would carry us to our destination, only to find our path blocked. Downcast though we were, we found comfort in the continued care of the villagers. The town crier regularly took to the village main square to announce how the work to clear our way goeth. As I rested in my transport, I felt the growing unrest from a faction of villagers. I worried that their dismay would turn toward me. After all, had I not walked from my transport to the space pod? Had we not taken our place in line before those who had waited what seemed like lifetimes? But we stayed the course, stalwart and sure, for the road had been hard and our journey far.
But what to my great joy when the town crier sent forth word that the way was open and our journey into the stars was to recommence! Into our pods we settled; such great anticipation leaving all aquiver. We began, and the wind blew my hair. I felt the chill of dark space fill my nostrils and promise thrills beyond imagination.
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Wikimedia Commons

Suddenly, cool, blue light flooded the sky. We were enveloped in the beacon that was foretold, the beacon that would let all who passed know that their hard work could be put to rest. It was time for the prize for which we had waited so long.

And then we zoomed around in the dark. It fucking hurt, but damn it was fun.

Why Spoonies Give Up

I decided that I had enough with my rheumatologist, (the second one I’ve tried thus far.) But who was going to manage my fibromyalgia care? I decided to try a medical group who has a special fibro care program, something that isn’t very common. Also available is complementary medicine and a med spa for massages and such. I called this week, told the scheduler why I wanted an appointment, and she told me the earliest appointment available was Saturday at 4 pm. Great!, I thought. This way Mike won’t have to work from home for me to go to this appointment alone.

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Image source

I wish I could go back in time and smack that scheduler up so she wouldn’t have set up a huge waste of time for me. It was abundantly clear that this doctor didn’t feel like being there at 4 pm on a Saturday. He also had no. fucking. clue. as to how to medically, (or relationally) treat someone with fibro. I’ll just do bullet points for how the appointment went.

– He didn’t take or look at the patient history, labs, and other test results I took the time to put together so as not to waste his or my time.
– It was pretty clear from his tone of voice that he didn’t understand why I had left my two previous rheumatologists. It was like he didn’t get why I thought my experiences with them were bad ones.*
– Diarrhea of the mouth began. Without asking any of my habits, he immediately launched into how people with fibro need exercise and I can’t spend all my time laying on the couch. I have to “use it or lose it”. I informed him that I have two young girls; I don’t spend all my time laying on the couch.
– He asked the basic “duh” questions: Where does it hurt? Is it joint or muscular? How’s your stress?
– He mentioned a few complementary medicine procedures, but then said he wouldn’t do any of them because it would hurt or it weirded him out.
– He told me that doctors don’t really know what to do and how to treat fibro.
– He criticized me for having to bring food in a lot for dinner, after I explained that I can’t cook as much as I used to because it hurts to stand in the kitchen for that long. It was mostly because he was concerned for the health of my children. (I explained that it’s just for Mike and me; we feed the kids different food from home.)
– He wrote an order for a sleep study. Rather than recommending a place, he told me they were everywhere and to just pick one.
– He said that the medicines I was on were about the most they could do for someone with fibro. He said that they do what they can medicinally, and then the patient just has to learn to live with the pain. I believe it was the long-winded version of “Suck it up”.

Finally, I just cut him off and told him what my treatment goals were. Specifically, I wanted to try any natural options available to cope with or alleviate pain. He referred me to their two naturopaths for that. He told me I would need to bring my big girl veins for the first appointment because they were going to draw a lot of blood because the naturopaths test for everything. He said going through that would be enough to make him not want to do it. I stood there in the room, arms crossed and staring him down. I was filled with rage, exhaustion, incredulity, and defeat. I screwed up my face and set my jaw so that I wouldn’t cry. That would be for when I reached my car.

Can you imagine if that had been my first doctor’s appointment for fibromyalgia? Can you imagine if I wasn’t confident in myself and my diagnosis? The ignorance and arrogance of our doctors can be a lethal combination for timely and appropriate help. So many journeys are stopped dead in their tracks because an insensitive doctor acts as though the patient’s problems would all disappear if they just took a walk everyday. Patients aren’t always open and honest with their healthcare providers for fear of being ridiculed, shamed, or made to feel crazy. When we feel as though there aren’t any safe havens, we stop trying. We end up enduring more pain than we should because the thought of another useless or abusive doctor’s appointment is more painful.

In this day and age, it is appalling how ignorant doctors can be when it comes to chronic pain. Millions of people live with it yet, only now, are syndromes like fibromyalgia beginning to be viewed as legitimate. Doctors who went to medical school more than five years ago, or don’t have any special focus or training with regard to chronic pain, are clueless. In my experience, cluelessness in doctors leads to doubling down on their ignorance and how much of a dick they are to you or how dismissive they are of you and your symptoms. Put simply, if they don’t know what to do with you, they don’t want to deal with you.

With such attitudes within the general medical community, it becomes incumbent upon spoonies to be their own advocates. We must surround ourselves with the support of loved ones and those who are on the same journey. We need to support organizations, like the NfmCPA, who amplify our voices when it comes to lobbying Congress for research dollars. We need to let our healthcare providers know when changes need to be made and not just accept whatever is handed to us. I have hope that the medical community will learn to help us. But we can’t just wish upon a star and dream. We have to make it so.

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*The reason I left my first rheumatologist:
At my first appointment, he prescribed trazadone to help me sleep. After a couple of doses, I began having intense suicidal thoughts and found myself yelling, out loud, to shout down the voices in my head telling me to kill myself. This ended up happening on a Saturday, so I left a message with a live person through the answering service, asking what I should do. I never received a call back. My primary care office ended up helping me out.
At the next appointment he fussed at me for calling on Saturday, I guess because I’m supposed to schedule my drug-induced mental breaks durning office hours. During that appointment he said he wanted to step down the Lyrica and replace it with Topomax. I asked if there were any side effects I should be concerned about. He shrugged and said, Only if you have glaucoma. When I got home, I researched Topomax. It looked like there was a possibility of some pretty horrible side effects. After that, I was done. The trust was broken, and I can’t have a professional relationship with someone like that.

The reason I left my second rheumatologist:
I actually stayed with her for about a year. I liked her at first. But it didn’t take long for the things I didn’t like about her to outweigh the good. She never remembered what we had talked about previously or what I was taking. I swear, she must have asked me if I had tried Neurontin or was taking a yoga class at three consecutive appointments. It was very difficult to get a word in edgewise with her. She tended to just steamroll you with her agenda. It seemed as though drugs we the only thing she cared about as far as treatment. The time I asked about natural options, she just handed me a pamphlet for a vitamin mix that is supposed to help with fatigue. And my weight. She was so fixated on my weight. No, I’m not a small girl anymore. The Lyrica and cupcakes made sure of that. She was bound and determined to get me on thyroid medication, even though my labs show that my TSH levels are within normal limits on two consecutive tests. (She also sort of fussed at me because I had my separate T3 and T4 levels tested when the order was just for TSH.) I expressed my unwillingness to add another medication to my cocktail while my levels fell within the normal range. She told me to take it and get yet another thyroid test. She also, again, told me that low thyroid will cause fatigue and weight gain. I’m like, you know what else causes fatigue and weight gain? FIBROMYALGIA AND LYRICA! I felt like I went with her as far as she could take me, so I’ve left. And I’m not the only one. I know others who have seen her and left because of her nonsense.

No one ever expects the mole!

When I suspected, and was finally diagnosed, with fibromyalgia, I thought I knew what that meant. I was going to be in some amount of pain for the rest of my life, along with an extra helping of mind-numbing fatigue. I checked with my Parents with Pain group, and it seems that I am not alone. We were all completely blindsided with various bizarre symptoms. It’s a cruel game of Whack A Mole; different symptoms and disorders pop up when you least expect them. And at times we feel like the moles have revolted, grabbed ahold of the mallet, and start to beat us back.

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Image by ccc7ccc at Deviant Art

Here is a list of just some of the bizarre indignities and medical nightmares we fibro people are forced to endure.

Muscle spasms
I think it’s safe to say that everyone has experienced some sort of muscle spasm at some point in their life. They range from tiny twitches in one’s fingers to backs seizing up, because you didn’t have anything better to do that day, did you? In hindsight, I realize that I experienced my muscle twitching years before I even knew that fibromyalgia was a thing. They start small, almost indiscernable, just a thumb barely moving involuntarily. When you try to show someone else, they don’t see it. You feel stupid and they decide you’re an attention-seeking idiot.
But now, there’s no denying the sudden moves my fingers make. Sometimes they keep me up at night. All to often, I’ll have almost drifted off into dreamland, when my index finger decides that it would rather point at my headboard. The stomach spasms are ones I never expected. It feels like being pregnant all over again, or like I’m incubating a tiny kick boxer.
It’s also way too easy for my muscles to spasm and stay locked so that I can’t move. I have literally looked the wrong way at the wrong time and landed myself in bed for two days because moving my neck was impossible without screaming bloody murder. On the plus side, it gave me time to watch and become addicted to Sherlock.

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I’m so glad Molly is also sick of my muscle spasms.

Night Sweats/Temperature Sensitivies
Sometimes I wonder if I should just bring a squeegee to bed with me. It doesn’t matter if I’m barely dressed and uncovered, I will still wake up in the middle of the night, drenched. Once I’m able to peel my face off my soaked pillow, I wipe off the small lake that had accumulated between my legs. There are plenty of good reasons to be wet in between your legs. This is not one of them.
To go along with the night sweats, sweating in general has become a thing. My fellow fibro folks have recounted tales of walking from their car to inside of a store and finding themselves turning into puddles. For me, the best part is stepping outside and immediately having a sweat mustache and soaked hair all around my hairline.
We also deal with sensitivity to cold. Along with being in more pain when it’s cold outside, my body has now decided to freeze at 73 degrees like it were 33 degrees in the house. I have heard other spoonies say that heat and humidity make their pain worse. Some of this is due, no doubt, to…

Swelling
The only time anyone should wake up and not feel alarmed by their giant hobbit feet is if they are, in fact, a hobbit. Tight, swollen feet are uncomfortable all by themselves without adding the enormous feat, (see what I did there?) of walking. Normally slender fingers also turn into sausages, making it difficult and painful to engage in normal activities…like picking up a cup to drink.

We can’t stay in one position for too long
One of my spoonie comrades said that if she stays sitting for too long, her tail bone swells. Sometimes with fibro, you just can’t win. If you lay down and rest for too long, it’s murder to get up and put weight on your feet. I have seriously felt like I was in some sort of physical comedy show where they immediately collapse upon standing. It’s so funny that you laugh until you cry….and cry….and cry until you ugly cry so that snot is all over your face and now you have a massive headache and have to try and stand up yet again. Ahem.
So, just don’t lay down, you might say. That’s all well and good, except, after standing for awhile your legs become tired and sore. Perhaps your back also gets in on the action. Soon after, your hips are like, Fuck this, I’m out, and give out on you so that you’re unable to put weight on them, which forces you to limp everywhere.

Neurological issues
Dizziness is pretty common. Fortunately for me, I don’t experience it constantly. But when I do, it is one of the worst feelings. Have you ever seen someone swirl soft serve ice cream or frozen yogurt onto a cone? When I’m dizzy, I feel like I know what it’s like to be that ice cream. I feel a sudden whoosh upward, starting at the bottom of my head and quickly swirling upward, so that my whole head is engaged before it’s over.
I consider myself to be a decently intelligent human being. However, all too often you’d never know it because of how stupid fibro makes a person. As a dear friend used to say, I can’t brain today. I have the dumb. Everyday, we wend our way through thick, goulash fibro fog. Once upon a time we may have been able to organize our thoughts easily. Now, they flutter out in foggy space as we try to corral them with slow-moving nets. We have difficulty finding, (or as I say, making) words. Sometimes we’re like a fibro-ridden Tantalus; words are there, just out of reach, and we are unable to grab them and send them to our tongues. Other times, they completely elude us.

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We become hypersensitive to stimuli. Screaming children pierce our eardrums. Too many people talking or things going on at once overwhelm us and make us want to cover our ear, close our eyes, and shut down. Sensitivity to light, smells, and startling events just add to the cacophony of stimuli issues.

Itchy, itchy, ITCHY!
I’m highly allergic to poison ivy. At Rachael’s first birthday I had it so bad that it almost took over my eye. I’ve also been introduced to the misery of PUPPPS. I had it for 20 weeks, (no, that’s not a typo) while I was pregnant with Zoë. Rather than just being confined to my belly, it was all over my body: my face, my neck, my arms and hands, even my butt.
None of this prepared me for the ridiculousness that is fibro itching. Without warning, it will suddenly pounce, sending you on a scratching frenzy. And it doesn’t stay in place. Oh no. It likes to play itchy tag. Now I’m on your leg! Yoohoo! Over here, on your butt. Ooh, I haven’t been to your palms lately. My itch attacks generally strike when I’m trying to go to bed. They also really like to torture my feet, which makes quietly scratching so as not to disturb Mike as he’s falling asleep nigh impossible. I’ve broken the skin from the intensity of my scratching.

Costochondritis
Costochondritis is a comorbid disorder that manifests itself by the swelling of the muscles in your chest. If you’re not familiar with the pain, you will worry that you’re having a heart attack. In fact, I feel like I’m playing heart attack roulette every time I have an episode. I worry that one of these days it will actually be a heart attack that I have written off as costochondritis. Moving and breathing during an episode intensify the pain. Stress also makes it worse. I take prescription strength anti-inflammatory twice a day to stave off the pain. And now I worry that some day my wrecked intestines will bitchslap me for it.

Interstitial cystitis
Imagine feeling like you have a urinary tract infection all. the. time. That’s the awesome that is interstitial cystitis. I feel like I live in the bathroom with the number of times I pee in a day. I just peed five minutes ago, and my bladder is already hurting. I often sit on the toilet for several minutes, just waiting for my body to let it go.

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Original image by lollipop at Deviant Art

Seriously, you could create a fade time lapse sequence while I sit and wait to pee. First, looking around to see what’s new in my bathroom, (nothing) and deciding if I want to paint the walls a new color. Fade to clipping and filing my nails. Fade to checking Facebook and Twitter. Fade to rage posting something from Jezebel. End sequence with me pushing out the pee like I’m giving birth. Aaaaaand, scene.

There you have it, folks. A not even nearly comprehensive list of all the extra BS we spoonies get to endure along with the pain and fatigue of fibromyalgia. I’ll end it here because I don’t want to bore you to death. Also I have to pee….again.